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Woman With Rare Condition That Made Her Face Sink In Has Cheek Rebuilt With Fat From Her Stomach

Woman With Rare Condition That Made Her Face Sink In Has Cheek Rebuilt With Fat From Her Stomach
Kayleigh in 2016, when her symptoms were at their most severe (PA Real Life/Collect)

A woman whose self-esteem was destroyed when her face began to dramatically sink on one side is finally feeling confident after having her cheek rebuilt with fat taken from her stomach.

When hairdresser Kayleigh Crowther, now 27, first noticed the left-hand side of her face looking more sunken than usual, she thought she must be developing chiseled cheekbones, having recently lost around 28lbs in weight.

But the left side of her face seemed to be visibly shrinking, leading to ignorant strangers asking if she had been in an accident or, on one particularly distressing occasion, if her appearance was because of having “cancer cut out of her face."

Kayleigh before her symptoms got severe (PA Real Life/Collect)

Kayleigh, of Rawmarsh, South Yorkshire, said: “When I first started to notice the sinking on one side, I thought I must just be getting chiseled cheekbones.

“Over time, it got more and more severe. Eventually, people would stare and make nasty comments. Once, someone asked me if I'd been in a car crash, and another woman said to me, 'Have you had cancer cut out of your face?'"

Hoping that cosmetic filler injections would restore her facial symmetry and stop her from feeling “disgusted" by her own reflection, Kayleigh went to a clinic only to be turned away by a medic, who told her there was something more serious afoot.

Kayleigh around aged 18 when she first noticed her symptoms (PA Real Life/Collect)

A long string of tests followed before, in 2017, while living in New Zealand, she was finally diagnosed with Parry-Romberg Syndrome (PRS), a condition characterized by the progressive deterioration of the skin and tissue in one side of the face.

In April 2019 her confidence was finally restored after she had a fat transfer procedure at Sheffield's Royal Hallamshire Hospital.

She said: “Before this, I was distraught. I knew that everybody else could see what I saw. It was soul-destroying to dislike myself that much – but now, I'm feeling the best I have in a long time."

Kayleigh before her fat transfer procedure (PA Real Life/Collect)

She added: “It's been a long road and there have been times where this could have easily swallowed me up, but I now know that I am Kayleigh with PRS – PRS doesn't have me."

Kayleigh had just met her partner Scott Gill, 29, a tiler, when she first began to notice her appearance changing when she was 17 – at which point she could not pinpoint exactly what was different, but felt she simply did not “look right."

It was when she turned 18 and began to go out clubbing with friends that, looking through photos the next morning, she realized the left-hand side of her face was looking increasingly sunken.

Kayleigh after her fat transfer procedure in April 2019 (PA Real Life/Collect)

“I had lost some weight around that time, so I thought I was finally getting chiseled cheekbones, which every girl wants at that age," she recalled.

“But in time, I realized it was only really on one side. People would say, 'Haven't you got lovely cheekbones,' – then I'd say, 'It's only on the left side, though.'

“Still, I wasn't in any pain and wasn't sure what exactly a doctor would be able to do for me, so I didn't think to visit my GP."

In January 2014, when she was 22, Kayleigh and Scott set off on the adventure of a lifetime to live in Australia.

But the paradise she hoped to find became a nightmare, as her face was becoming increasingly asymmetrical, to the point where people were staring and making comments.

“I'd overhear children saying things like, 'Mummy, what's happened to that lady's face?'" she added.

Kayleigh and Scott (PA Real Life/Collect)

By that December, she was feeling so self-conscious that, on a trip back to the UK for Christmas, she visited a clinic in Sheffield, South Yorkshire, planning to get facial fillers.

She continued: “I had visited the doctor beforehand, but they didn't run any investigations or anything at that stage. They really didn't know what was going on.

“I almost didn't care what it was, I was just desperate to feel better. To dislike myself so much when I was that young was awful. I would've done anything to stop feeling disgusted whenever I looked in the mirror."

Kayleigh and Scott (PA Real Life/Collect)

Kayleigh continued: “I went to Transform in Sheffield fully intending to get fillers, but thankfully, I was looked after by the most amazing woman.

“She sat me down and said that she didn't want to just take my money and pump me full of filler when there was clearly something not right.

“She said I had to find out what was causing the sinking before I did anything else."

Kayleigh around aged 18 when she first noticed her symptoms (PA Real Life/Collect)

So, back in Australia in January 2015, Kayleigh was bounced around various specialists, including a rheumatologist and a neurologist, before paying for a private MRI scan, so she could get a better idea of exactly what was going on under her skin.

She was still looking for answers when, in November 2015, she and Scott moved over to New Zealand, where she continued to try and find out what was wrong.

“I was trying really hard not to let it rule my life, but I was so unhappy," she recalled. “I was pushing myself, forcing myself to go out into the world – but inwardly, I felt anxious and scared all the time. I was even on anti-anxiety medication. I just couldn't seem to pull myself out of it."

Kayleigh now, following her fat transfer procedure (PA Real Life/Collect)

Thankfully, in New Zealand, after tirelessly emailing plastic surgeons, she finally received a long-awaited answer.

She said: “A plastic surgeon came back to me, saying not to quote him on it, but that he'd seen one other case of PRS in his career and it looked similar to mine.

“So, I went to the doctor armed with my MRI scans and the suggestion that it could be PRS, and finally medics in New Zealand agreed that they thought that's what I had."

She continued: “I didn't know much about it, especially as it's so rare, but I looked it up and remember seeing all this terrifying, worst-case scenario information, like photos of really severe cases.

“I remember saying to Scott that I didn't know how I would carry on and cope if that was going to be my future. How are you supposed to keep moving forward?"

According to the National Organization for Rare Disorders, PRS, the cause of which is unknown, sees the skin and soft tissues in one half of the face – usually the left-hand side – slowly shrink.

Kayleigh and Scott (PA Real Life/Collect)

The initial facial changes, which tend to happen before the age of 20, usually occur around the cheek or upper jaw, and the severity varies from case to case.

The condition appears more typically in women than men and, while exact statistics are unknown, physicians have estimated it affects between one in 250,000 and one in a million people worldwide.

The suggested treatment in Kayleigh's case was a free flap facial reconstruction, where flesh would be cut away from an area like her back or thighs and transplanted into her face.

Kayleigh after her fat transfer procedure in April 2019 (PA Real Life/Collect)

“I'd been quoted $20,000NZD ($12,798USD) for the surgery but at that point, I'd have paid any money to feel normal again," she said.

But before Kayleigh could have the operation, visa issues meant she returned to the UK in March 2018.

“While I'd been away, I'd posted photos of my travels, but I had always been in control, making sure I posed in a certain way, or took them from an angle that meant you couldn't see how bad my face looked," she explained.

Kayleigh on her travels, when she would try to hide her face in photos (PA Real Life/Collect)

Kayleigh continued: “But coming home meant seeing friends I'd not seen for ages. I knew they'd be shocked by how different I looked, so I had to take the plunge and tell them I'd been diagnosed with PRS.

“Thankfully they were amazingly supportive. Back home, I hit the ground running. I was so close to getting answers. I didn't want to stop."

Doctors in South Yorkshire confirmed Kayleigh's PRS diagnosis and she was referred to the Royal Hallamshire Hospital in Sheffield, where she was placed under the care of a facial surgeon.

Kayleigh in 2016, when her symptoms were at their most severe (PA Real Life/Collect)

Rather than perform the free flap procedure, he instead suggested they try a fat transfer.

“He was absolutely amazing. I trust him wholeheartedly," she said. “I didn't realize at the time, but the free flap procedure had more risks than I thought.

“It involved operating near major nerves in my face and I'd have been left with several scars. If anything else went wrong, I'd have been a broken woman, so I'm glad I didn't do it, and I don't intend to in the future either. Instead, my surgeon suggested we try fat transfer injections. They are far less invasive, and we really had nothing to lose."

So, in April 2019, during a two-hour procedure , Kayleigh had liposuction to take fat from her stomach, which was then injected into her face by her ear and hairline.

Recalling the procedure, which she had on the NHS, she said: “I came round from the surgery and was handed a mirror. I can't describe it – I looked symmetrical, like my old self again.

“I've never been so happy to see my own reflection."

Kayleigh and Scott now (PA Real Life/Collect)

Some of the fat has since broken down, meaning Kayleigh's face has sunk a little, but much of it has stayed, which is proof to her that the procedure was a success.

Later this month, she will be meeting medics to see if she needs a second bout of fat injections and she hopes that, over time, she will slowly be able to have her cheek entirely rebuilt.

Luckily, her self-esteem is growing in tandem, giving Kayleigh the confidence to speak out and raise awareness of PRS.

Kayleigh's stomach after liposuction (PA Real Life/Collect)

“It's such a rare condition that I've only recently been able to find other people like me via a Facebook support group," she said.

“It feels so good to speak to people who get it. A lot of the information you'll see on the internet when you're first diagnosed is worse-case-scenario, so naturally, you'll go into panic mode. But I hope by sharing my story I can show others living with PRS that it doesn't need to take over your life. You're still you.

“To everyone else out there, I'd want to say be a little kinder. Nobody likes to feel different, and those stares and comments can be awful. I was already feeling like an alien – I didn't need people looking at me like one."

Kayleigh now, following her fat transfer procedure (PA Real Life/Collect)

Praising Scott, who has been with her every step of the way, for his unwavering support, she concluded: “I couldn't have got through this without him. I didn't accept myself – but he always did.

“He's been there throughout this entire journey, and has helped me see that the best way forward is to embrace myself.

“When I feel down, and like there is hardly anybody else out there who understands, he says to me, 'I know your condition is one-in-a-million, but you're my one-in-a-million."